Epidermolysis Bullosa Dystrophica, Dominant Type

Common Name(s)

Epidermolysis Bullosa Dystrophica, Dominant Type

Epidermolysis Bullosa Dystrophica is a group of genetic conditions that causes an individual's skin to be very fragile and to blister easily. In the past, they were often called “Butterfly Children” because their skin is as delicate as a butterfly’s. Individuals with epidermolysis bullosa dystrophica have such sensitive skin that blisters can form from something as gentle as them scratching their own skin or it rubbing against their clothes. The reason for their fragile skin is a specific gene mutation affecting proteins which give skin its qualities of flexibility and strength. Cases can range from moderate to severe depending upon the individual and what type of epidermolysis bullosa dystrophica they have. Some may experience intense scarring from the blisters while other people may not scar at all. People are born with epidermolysis bullosa dystrophica and it is usually visible a few days after birth when blisters will begin to appear. Epidermolysis bullosa dystrophica is a hereditary disease and 6.5 per 1 million babies born in the U.S. are affected. One type of epidermolysis bullosa dystrophica is “Dominant Type”. This is a relatively mild form that is characterized by fragile, blistered skin.

Source: Advocacy organizations associated with the condition.

 

Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Epidermolysis Bullosa Dystrophica, Dominant Type" for support, advocacy or research.

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United Survivors with EB

USeb, a nonprofit corporation organized & run primarily by people with EB. Our mission is to provide services that will assist people with EB in becoming more self-reliant through social, cultural, recreational, rehabilitative, educational, & occupational opportunities. We value self-reliance because it inspires individual productivity, builds self-esteem, stimulates human happiness, and heals the dignity of the soul. These benefits particularly enable people with EB to cope and rise to a position where they can succeed independently, help others to do the same, and contribute to society.

Last Updated: 7 Nov 2013

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General Support Organizations

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Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Epidermolysis Bullosa Dystrophica, Dominant Type" for support, advocacy or research.

Logo
United Survivors with EB

USeb, a nonprofit corporation organized & run primarily by people with EB. Our mission is to provide services that will assist people with EB in becoming more self-reliant through social, cultural, recreational, rehabilitative, educational, & occupational opportunities. We value self-reliance because it inspires individual productivity, builds self-esteem, stimulates human happiness, and heals the dignity of the soul. These benefits particularly enable people with EB to cope and rise to a position where they can succeed independently, help others to do the same, and contribute to society.

http://www.ebsurvivors.org

Last Updated: 7 Nov 2013

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General Support Organizations

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Scientific Literature

Articles from the PubMed Database

Research articles describe the outcome of a single study. They are the published results of original research.
The terms "Epidermolysis Bullosa Dystrophica, Dominant Type" returned 0 free, full-text research articles on human participants.

Reviews from the PubMed Database

Review articles summarize what is currently known about a disease. They discuss research previously published by others.
The terms "Epidermolysis Bullosa Dystrophica, Dominant Type" returned 0 free, full-text review articles on human participants.

 
 
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Clinical Trial Information This information is provided by ClinicalTrials.gov

There are currently no open clinical trials for this condition.